TEDMED: Abysmal Transportation at a Great Conference

The above photograph of a Washington DC trolly bus was the bane of my existence at the TEDMED conference I attended. The conference itself was an amazing experience. It was nothing like the anthropology conferences I have been attending since I became a professional anthropologist. Anthropology conferences are bare bones. No swag, sub basic speaker set ups at mid line or cheap hotel/conference centers. Well, last week I learned how the other half lives. I have no idea how much money was poured into the TEDMED conference but it was substantial. And this I suppose reflects the significant sum of money people invest in attending. While I did not shell out anything to attend thanks to the Hastings Center that got me a scholarship, others forked over $5,000. What does this money buy a delegate? Access to the Kennedy Center, a social hub in the form of a huge tent--think circus sized tent, dinner at the Library of Congress, excellent food, meaning breakfast lunch and dinner, and an open bar in the evening. It was the open bar that shocked me. An open bar and anthropologists is a bad mix. Think stupor here!

While I could wax poetic about the facilities and speakers there was one glaring flaw--transportation in the form of buses from my hotel to events all over Washington DC was problematic at best. And here I am being far too polite. Transportation was a disgrace, totally unacceptable. Prior to attending the conference I inquired multiple times about accessible transportation. The first reply was typical. Of course we have accessible transportation. When I inquired as to what that accessible transportation entails I was informed "some buses" have wheelchair lifts. At any other conference I would have interpreted "some buses" to mean you are on your own. We have an accessible bus but have not seen it since the Nixon Administration. However, given the conference was a TEDMED event I had higher hopes and expectations. I will say this about the buses. I was able to get to every event. That is as far as my praise can go. By itself this is an indictment of just how bad bus service is in America for people with a disability.

What I was told before I left for Washington DC was correct. Some buses were accessible. Not many, but some. If each and every bus that had a lift operated and the driver knew how to use the lift  I would have experienced minor inconvenience. But as most people that use a wheelchair know just because a bus has a lift does not mean it works. I would estimate half the wheelchair lifts on "some buses" were not operational. This transformed my transportation experience from being a minor inconvenience to a major problem.

 What problems did I encounter? The usual excuses abounded: "the lift is broken", "the key is missing", "I don't know how to use it", "the tie downs are gone", "I don't know how to use the tie downs" etc. At any other conference or tour of the city this would be expected. But we are not talking about any other conference or city tour. Major funding goes into the TEDMED conference. It is a spectacular conference, speakers uniformly superb, polished even, and all other events were extremely accessible. The Kennedy Center was a delight, bathrooms abounded, staff helpful and professional.

By the end of the second day I realized two things. One, at least two buses and as many as six would pass me by before I could get on. Some accessible buses became a lonely singular bus. I lost a great deal of time simply waiting and watching other delegates get on and off bus after bus after bus. This did not seem to bother any delegate or employees. Second, the transportation supervisor lied to me and was willing to say anything to get me to stop complaining. After watching many buses pass me by I confronted her and told her each and every bus with a lift had to be tested before it was put in service; and be tested by the driver. She said of course we do that. The next bus arrived and the driver told me he had never used a lift a before and had no idea how to operate it. I quickly learned the transportation supervisor was worthless.  The actual drivers were the one's to know. In the end I was able to manage and did not miss any event. However, if I had trouble at a prestigious conference such as TEDMED what takes place at an ordinary conference? What happens to the average tourist with a disability who tries to use a trolly bus? These question make me think back to 2004 when my son and I tried to visit the new Air and Space Museum outside Dulles Airport. Just like I experienced at the TEDMED conference, the bus had a lift but it did not work. Eight years later it appears not much if anything has changed. Lip service is paid to accessible transportation. Try and use those pesky lifts and a new harsher reality emerges.

TEDMED

I am leaving early tomorrow morning for Washington DC. I will be attending the TEDMED conference. Thanks to the Hastings Center I received a full scholarship to attend. Without this support attending the conference would not have been possible. I am going as a delegate and scholar. Sounds impressive. I eagerly await this conference as I often watch the TED Talks. If you are not familiar with them check out You Tube or Netflix. The talks are uniformly engaging. I hope to get some good photos that I will try and post. I am somewhat nervous about transportation. Washington DC and accessible transportation has been problematic at best. There is a stark dichotomy between what is supposed to be accessible and what is actually accessible. I have been assured I will not encounter any problems. Gee, some how I think I have heard this before. Always get worried when I am told not to worry, it is a recipe for disaster.

Growth Attenuation: A Cultural Mess

I consider myself to be a disenfranchised individual. I will never fit into mainstream society. I will never be accepted. My presence always open to question. My humanity will be subject to public debate. My ability doubted and belittled. Bigots abound. They love to accost me in the name of "safety", "concern" and have my best interests at heart. This is an old story. I don't like it and have railed against social injustice for decades. What sobers me is that I am lucky, very lucky. I can defend myself and am quite good at it. I also know the bigotry I encounter is minimal when compared to people, humans, with a cognitive and physical disability. No other population in American receives less support and services. No other population is as stigmatized. This is outrageous. Much can be learned from those who care about people with profound cognitive and physical disabilities. Thus I deeply admire the scholarship of a people like Eva Kittay and Allison C. Carey. I urge you to read Kittay's recent edited volume Cognitive Disability and its Challenge to Moral Philosophy and Carey's wonderful book On the Margins of Citizenship. This provides the academic context but cannot replace touching thought provoking blogs such as Life With a Severely Disabled Daughter and Single Dad, Disabled Daughter that detail what it is like to parent a person with a profound cognitive and physically disability. This bring me to why I am posting today.

Within the past 48 hours I have read two posts on growth attenuation no doubt in part inspired by the articles in the Guardian (see my posts on March 15 and 16). Both writers are adamantly opposed to growth attenuation. Both are passionate about their opposition. Single Dad Disabled Daughter writes that he considers growth attenuation to be "immoral mutilation". The words mutilation were used when growth attenuation exploded in the news but its usage has waned as has the moral outrage. I do not know if the lack of moral condemnation is good or bad or somewhere in between. I do know that in spite of the efforts of the Seattle Working Group and the publication of their paper in the Hastings Center report on growth attenuation it firmly remains a polarizing issue. It also highlights how poorly understood disability is from a cultural standpoint. Equality and an inclusive society is not to be found in blue wheelchair logos, ramps, elevators, and wheelchair lifts. Obviously our physical environment is far more accessible and the law is firmly in our favor. But this only gets people with a disability so far. Utterly absent is cultural acceptance and a social mandate to protect the rights of people with a disability--any disability.

In referring to his severely disabled daughter Single Dad writes: "We don�t need just physical accessibility. Nowadays there is a lot of that. But when was the last time you saw an adult changing table anywhere other than my house? Even �family bathrooms� (and I just learned what they are) may have infant changing tables, useless to us. Where is there a quiet place, if needed, anywhere for the disabled? Pearlsky loves IKEA and Home Depot and the symphony, but sometimes it becomes a bit much. How fast can we get back to our van? There is no other place to escape to. If I could just pick her up � We need either mental accessibility, growth attenuation, or � what we have now."

Sorry but no. Just no. No! Mental accessibility is decades away. By this I suspect Single Dad means cultural acceptance and inclusion I referred to above. He cannot find a changing table for an adult because there is no social mandate for it to exist. He cannot find a quiet place because people do want those with a cognitive and physical disability to be in their mix. He cannot get on a plane because the airline industry has been hostile people with a disability for decades. This is not a question of architecture but rather a society deciding the best way to cope with people like his daughter is to exclude them. Shunt them off to group homes or resource rooms in schools, transport them on short buses. The message is very clear. Segregation is socially accepted. People with a disability, especially those with a cognitive disability, are different, not equal.

Is growth attenuation needed? In a word, no. Could it in exceedingly rare instances after all other avenues of care have been exhausted be appropriate? This is possible. I am not willing to put an outright ban on growth attenuation as such absolutes make me uncomfortable. I will not deny growth attenuation will make caring for a person with a profound cognitive and physical disability physically easier but is that really the answer? I think not. How about appropriate social services or even better comprehensive services. What about providing not just some but all needed adaptive equipment that would make care giving easier. How about community support. How about home modifications designed to meet the needs of the person in their home. None of this is available without a fight. Some simply is a pipe dream--the comprehensive services for instance. Again, this is a social problem.

What we have now in terms of growth attenuation? Again, no. Growth attenuation has gone underground. It is being done in secret and privately. Doctors are avoiding ethic committees, ethical oversight and skirting the law. This is frightening. It is exactly what the Seattle Working Group did not want to happen. If growth attenuation is performed we must study the long range implications. Are children subjected to growth attenuation getting strange cancers as they age like some women have whose growth was attenuated in the 1950s? We can only learn how effective growth attenuation is if it is studied in earnest. Only then can we address if it is truly an effective treatment.

Growth attenuation is a radical treatment. Whether opposed or in favor, there is something deeply unsettling when doctors are removing healthy organs from children. I question whether we are targeting a specific population of people, treating them as a class apart. No one would ever suggest attenuating the growth of a child with typical cognition. The idea is repugnant. But it is a solution for children with profound physical and cognitive disabilities? Worse yet, we willing remove healthy organs yet deny the very same people with cognitive and physical deficits organ transplants as a life saving treatment. To me a very powerful social message is being sent. People with cognitive and physical disabilities are not fully human, they do not have the same human rights. We have been down this road before in America and elsewhere. One example should suffice. Eugenic sterilization. We look back in horror at what took place. Read Edwin Black's searing work, War Against the Weak and be ashamed. But dig deeper and think about one state, North Carolina. Long after eugenic sterilization was discontinued 7600 people were sterilized against their will some as young as 14 years old.

I do not maintain growth attenuation is akin to eugenics. But some of the lessons learned from this dark chapter in American history are worth consideration. Will we look back aghast that we attenuated the growth of children with profound cognitive and physical disabilities? Will the Ashley Treatment be seen in the same light as we now regard to the famed Oliver Wendell Holmes statement about three generations of imbeciles is enough when deciding Buck v. Bell?

I rarely if ever close a post with a quote. Long ago I was taught not to do this. The idea being leave the reader with your own words. But I lack the passion and experience a parent of a child that has a profound cognitive and physical disability. So I end with Claire Roy's forceful words at Life with a Severely Disabled Daughter that I hope will sting readers to the core. I know this is how they affected me.

"We are a stupid people, loathe to study and learn from our collective history. We have burned the witches, strung up the niggers, gassed the kykes, lobotomized the crazies, beat up the faggots all in the name of what was right and good. We look back now, in horror at our primitive ancestors� sins, failing to remove the mote in our own eyes. Disability rights�especially the rights of those most severely affected�are the final frontier of civil rights action. Sadly, I suspect a few more generations of dehumanization of our most vulnerable will pass before any sort of serious political action will take place to bring about real change.
And mark my words, the day will come when we see growth attenuation for the misguided barbarism that it is. On that day, be I the age of Methuselah, I will stand up and point my finger vigorously and without qualms say �I told you so.�